February 26th, 2021 by Janine

I thought we’d killed them!  In fact I had thought they were already dead well before the winter arrived.  We looked for them so many times only to be disappointed when we couldn’t see them.  I presumed the birds or next door’s cat had made them into a feast.  We had stopped feeding them, stopped ensuring the water was clean and had not given them a second thought when the pond froze over. 

Yet, here they are.  Alive and kicking!  More accurately, alive and swimming!  And eating!  Our fabulous fish, still zooming around in our horse trough from the 1800s; Seville (very orange), Beirut (grey white patches with orange head), and two whose names I can’t even remember!  What’s more there’s an extra bod!  It seems the fish got the memo about the Covid lockdown and decided to get busy!  Now, I need to find a new name for our new addition and rack my brain for the other names.  Where on earth were they hiding on all of those occasions we looked for them? 

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Blue Sky London Day

Added meaning

I am going to add an interpretation to this event in my mind.  A helpful, healthy interpretation.  We can do that, we humans.  Our minds do it all the time.  We often add a narrative, meaning or attribution to an event that is negative, unhelpful and unhealthy.  When we do, pain and suffering soon follow. 

Alternatively, we can also add helpful, wonderful, healthy, inspiring, enjoyable narratives to events, circumstances, thoughts, feelings and sensations.  These can help us feel and create pleasure, celebration and hope.  I have decided the discovery of Seville, Beirut, Unknowns 1 and 2 and the new boy (maybe it is, maybe it isn’t) are a wonderful symbol of resilience, energy and thriving in a constantly changing environment and when faced with never ending challenges.  My darling fish, you are one of my sources of inspiration for 2021.

I too, am resilient, can find energy, thrive and feel alive no matter what challenges me and changes around me.  This doesn’t mean I will feel ‘up’ every moment of every day.  It doesn’t mean I won’t have the odd tough, emotional, low week.  It does mean that I can cope and I have hope.  Today, is a beautiful sunny blue sky London day, the fish are alive and I have had some great news about my body. 

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Undulating caterpillar inching forward to new heights

Long tough road
The horrid month

It has been seven months since I wrote last.  Seven months since I came out from under the horrid month in hospital which almost broke me; the month where I had a stem cell transplant, a blood clot in my arm, a dangerous e-coli infection, went bald and could not be supported by an in-person visit from hubby.  That was the hardest part. 

Seven months since I got home from that experience only to be hit by a c-diff infection.  The time has gone so quickly and seems like a life time ago yet also feels like yesterday, raw, significant, a milestone, an awakening.  Covid, lockdown, fatigue, pain, overwhelm, slowness, feeling good then feeling shattered, taking on too much then letting somethings go. 

The last part of 2020 was a health roller coaster, though mostly without the sharp heights.  Instead it’s been more like an undulating caterpillar of three steps forward, two steps back, experiencing loss and frustration about not being able to do as much, or do things now in the way that I used to be able to do them (and may never be able to again) before embracing acceptance and commitment.  In recent months I have finally focussed on what I can do, in the way I can do things, and consequently felt healthier, happier and positive about moving in the right direction. 

I finally learned that slow can be good.  Really learned it.  Fully experienced it instead of deep down thinking it doesn’t really apply to me, only to others.  I’ve let go of ‘not being good enough’; put a stop to ‘I need to be hard on myself otherwise I won’t perform well, succeed, be respected, be ok, be enough’.  I reminded myself of my catch phrase for last year ‘consistency’ and how the long game even if played slowly, gently, is a good, healthy, empowering game to play. 

Another of life’s games has been restored: work.  I love it.  I love being the clinical psychologist I worked so hard to be.  I love making an authentic positive difference to other people, helping them learn about themselves, find their answers, try out their new skills, manage their mental health and become their own mental health coach.  I love helping people identify what matters most to them, know their values, embody their values daily and use their values to guide their decisions, make and deepen connections, grow and feel whole.  Even writing this paragraph feels inspiring. 

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Skin reaction to UTI infection – immune system out of kilter

Yet another infection

Yes it’s been tough and it continues to be tough. My immune system has needed constant boosts of growth injections to help it stand on its own two feet.  Some people with Myeloma recover steadily after their transplant, some are back to work and exercise within three months.  I wasn’t.  I couldn’t.  My body simply couldn’t cope.  It needed more time, more nurturing, more monitoring, more help.  I needed more help and that’s OK. 

Then, once again as I sat safely in the hands of my amazing medical team and began to improve in the early days of January 2021, WHAM, another infection.  Another ‘we need to admit you to hospital’.  Sigh. This was a bummer. 

My mind began racing.  I can’t do this again.  I don’t want to be in hospital, without hubby, during covid, when the risk of coronavirus is high.  I’ll fall apart if I have stay in hospital again…don’t make stupid mistakes, if the oncologist says you should be in hospital, you should go…I don’t want to, it means another PICC line, another chance of a clot, more chances of infection, more chances of low mood and slower recovery.  Please, please, please, let there be another way. Is the Universe giving me another test?  Really?  Don’t I deserve a break?  My mind went to all the old negative unhelpful places. 

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Resigned and ready for hospital admission

Back to hospital

Eventually I came up for air, paused, took a breath and calmed my mind down.  I nutted things out with hubby and made a plan.  I negotiated with the medical team that I would medicate and monitor at home, have two weekly check-ups and admit myself if I got worse.  Relieved I didn’t have to go in, I packed my bags just in case, cried and begged my body to get better.  It didn’t.  It got worse.  Fever, weight loss, no appetite, no energy and high temperatures.  Then arrival of a reactive inflammatory skin condition, joint pain, swollen ankles, knees and knuckles.  Lovely. 

Never by halves Janino.  It wasn’t covid, when covid was all the rage and one I wouldn’t wish on anyone.  This hiccup was all caused by a bloody annoying urinary tract infection (UTI) that most of us would send packing to the hills.  Instead with my immunocompromised self, it stuck around, dug in and said ‘hey, you are not getting rid of me that easily’ and what’s more ‘I am going to wreak havoc all over your body’.  I can almost hear the UTI saying, ‘Yeeha, playtime!’

I dressed in clothes to get straight into a hospital bed and reluctantly presented myself for admission at the Haematology Assessment Unit.  Six hours later I was home.  Yeah.  Home.  How cool was that!!  The team had made another plan.  They propped me up with some different medication, organised a dermatology and rheumatology consultation, and knowing how I felt about admission, had reviewed and decided I would recover better and be at less risk, at home.  Here I was back in my safe place again.  Relieved.  Pleased.  Begging my body to improve and begging the bugs to stop bringing my life to a screaming halt over and over again. 

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Birthday meal in Lockdown – delicious! Look at those curls!

Walking the talk: I asked for help

The UTI is gone, the skin flare has gone and I’m on a four week steroid cycle for the reactive arthritis that seems to have stemmed from my immune system going into overdrive trying to get rid of the nasties.  I even have a full head of thick hair, albeit an inch all over and bouncy curls I’ve never had before.  I’ll take it.  The arthritis may be challenging, it’s hard to walk because of remaining swelling and pain in my ankles and knees.  It’s virtually impossible to turn anything or pick up anything up with my left wrist but right now I’m feeling good.  It’s been a good two weeks. 

I’ve even re-learned that it is OK to ask for help; help to put my shoes on, cut up food, unscrew the top on a jar, get dressed, stand up, get to appointments, get in and out of a car.  It pushed all my buttons about needing to be independent, not being a burden, and telling myself I just need to get on with it.  I learned to ask for support and for asking and receiving support, to be ok. 

Catching hubby laughing at me for trying to help myself and my being too stubborn to ask him for help did both annoy me and make me laugh; at myself and him.  He knew that gently teasing me was exactly what I needed and often need to help me keep perspective.  I can cope with this residual pain and swelling.  It will pass.  Something else will show up and I’ll deal with that too.  In the meantime, the news from my clinic review today made today an even better day.

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Hey body – I hope you know how loved you are

The good news

My immune system is BACK. 

My neutrophils are now up over 5 after struggling to stay over 1.   My body is generating lovely new cells and my platelets are now over 180.  My paraprotein levels are stable coming in between 4 and 6 for the last three months.  Whoop whoop!!

What’s more, I have tolerated my first Covid vaccine (Pfizer) well, with no side effects.  I can now have all of my other childhood vaccinations re-done.  My body is ready.  Thank you, body!  I knew you’d show up.  Well most days I did.  Occasionally I wondered if you were going to say it is too much hard work but here you are, showing up and stepping up.  Thank you! 

I am so so grateful because I love life. I still have a lot to do and more importantly, I still have a lot of person to BE.  I can BE and do that now thanks to you, body.  Once fully jabbed with all the renewed protection, I will be much safer out and about in the community again.  The vaccination timing is looking good for alignment to when UK lockdown eases.  Yippee.

I am now on six weekly monitoring instead of having to go up to hospital for one thing or another at least once per week.  This is thrilling!  This is normal life!!

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Latest science about Metabolic Pathways in Multiple Myeloma

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Cellular Metabolic Pathways in Multiple Myeloma

 Super scientist

I am becoming super geeky about Myeloma and have begun reading loads of journal articles about the metabolic pathways, processes, genes and enzymes that cause, maintain and promote Myeloma relapse.  I wasn’t ready for this level of biochemical detail before but now I seem to be able to absorb the info and am fascinated by it.  The brain fog has lifted!   In case you fancy a bit of geeky biochem cancer guff – check out this link

I am learning about how to shut down the pathways, fuel and microenvironment that Myeloma likes the best – predominantly glycolysis and glutaminolysis.  This new in-depth knowledge feels empowering, gives me a sense of control, is already helping inform my decisions about further treatment and identify changes and renewed commitments to my preferred lifestyle choices.  A new chapter is opening in my life, health and Myeloma journey.  I am working on creating the best integrated health care plan that I can. 

I am still being realistic.  I haven’t forgotten the stats.  I am still in my 5th year of a 7-10 year prognosis.  For now, nothing is off the table; the traditional medical route, off-label drugs, supplements (specifically targeted to block pathways), Jane McLelland’s Metro Map and How to Starve Cancer approach, Chris Woollams Canceractive approach, meditation, exercise, oxygen therapy.  I feel full of hope for thriving, for a high quality life, a long life and I feel good. 

I am alive and kicking.

All there is to do now is to be and sit in this feeling, let it cover me like a cloak or envelope me like an exceptionally warm, comfy hoodie, which seems to be all I wear these days! 

P.s. Tookie – while I do love you, keep your paws out of our pond!

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Me and hubby


Rebecca Campbell – Goldfish; Erik Karitis – Caterpillar; Jon Tyson – Good news; Kristine Wook – Vaccine Teddy Bear; Brandi Ibrao – I hope you know how loved you are; Chewy – black and white cat

© 2021 Janine Hayward  All rights reserved.

Posted in Blood Clots, C-diff, Covid, E.Coli, Fatigue, Glutaminolysis, Glycolysis, Metabolic Pathways, Pain, Psychology for Cancer, Stem Cell Transplant SCT Tagged with: , , , , , , , , , , , , ,

Being special black old man cancer - Before Diagnosis and Special
December 9th, 2016 by Janine

I’ve always liked to be special but this is taking it a bit far.  4800 people are diagnosed with Myeloma every year in the UK and now I’m one of them.  I didn’t think I’d be saying that.  Well, actually, I did think I’d end up with cancer at some stage; most people do eventually don’t they?  It is in my family…but then I didn’t think I’d get it until much later.  I certainly didn’t think I’d get a cancer that is more unusual than others (15% of blood cancers, 1% of cancers generally) but, hey, I did say I like to be special.

I’ve chosen a cancer (or its chosen me) where usually a person is male, over 70, of African origin and instead I’m female (hurrah!), under 50, and white.  How is that for ironic?  I tell you… be careful what you put out to the Universe because the Universe delivers…maybe asking to be special wasn’t such a great idea!  Seriously though, this is one interesting cancer and I found myself kicking into scientist project manager mode as I ingested as much information as I could get about this new presence in my life.

Friends have asked: how did I find out?  What had I noticed?

Do people ask this because they’re scared they have an illness they don’t yet know about?  Or are people just curious?  Are they nervous about the seeming uncontrollability and randomness of an illness striking?  We never think it will happen to us, or our good friend or our family member but it does.  Illness happens to good people, bad people, people people, every day.  Some illness may be preventable, you know, the usual stuff about stopping smoking, eating well, exercising.  Frankly, if you don’t do those things you really are making it much harder for your body to keep working well for you.  Otherwise, illness just happens and the why is so often still a mystery.

Maybe my getting myeloma is like a metaphor for those of us who are so driven, organised, high achieving, generally healthy, and happy, who always want more, crave growth and development, yet simply cannot control everything. We cannot eliminate uncertainty and must learn to ‘bounce’, flex and sway in the wind if we are to cope with life’s little and ginormous surprises!  For all you control freaks out there (you know who you are and I love you!), I get it, I do.  I like to plan, organise and manage my way to eliminating as much uncertainty in day-to-day life as possible (we even have apps to help make this happen these days) and then demand and embrace the uncertainty, spontaneity and adventure while on holiday.  When it boils down to it though there is only so much we can control and that is OK. Life is meant to be this way; uncertain (spice of life and all that) and we can learn to cope well.

I knew something was wrong.  I’ve known for years.

BUT…I kept doubting what I knew because all the specialists, GPs and test results over the years had reassured me everything was fine.

Except one, a natural killer (NK) cell test that I’d had during IVF treatment (another story).  Even then no one mentioned that the presence of aggressive NK cells might indicate something nasty was going on, something other than my body being unable to let pregnancy cells implant properly.  When I got this result back in 2009 and it was repeated in 2012 (with increased NK aggression levels) I knew something was wrong with my immune system.

I just didn’t know how serious it was.  I also didn’t know what normal feels like, though I strongly suspected that most people didn’t have the trouble getting out of bed that I did, feel frequently achy, need regular Saturday afternoon lie-downs or constantly feel like their adrenals were maxed out.  I often thought of the wonderful, amazingly energetic women in my life who appeared to have energy to be super-mums, triathletes, Tour de France-type cyclists, mountain climbers, sailors. I’d think: their bodies can’t feel like mine does everyday, can they?  Then I’d look at the stress I always injected into my life; taking on jobs that were often bigger than me with steep learning curves each time, doing a masters and a doctorate, striving to work out a minimum three times per week and think, well, I bring on my low energy by my lifestyle choices.

Recently though, having finished the doctorate and chased it with a long break in New Zealand, I started working from home at my own pace on academic and exciting business projects. I had no reason to feel low energy or low mood or slightly and occasionally breathless. But I did feel these things and I didn’t understand why.  I kept thinking, I’m 47-years-old for goodness sake! I shouldn’t feel like this!  I had mentioned I had some slight breathlessness to Mum who insisted I get it checked out. So, when the offer a free NHS Health check for over 45-year-olds came through the post, I booked the appointment immediately and to see the GP on the same day.

In fact, it had also crossed my mind that my symptoms may be to do with becoming peri-menopausal.  I thought, if so, it would probably be prudent to request a test to get a baseline of all my hormone levels so the GP and I could monitor development and make more informed decisions over the next few years.  Sounds all too sensible when I read it back like this but actually, it was the lady in my local health nutrition shop that had suggested this, after I explained my mood had been a bit up and down, I’d been feeling hotter than usual (heat not sexy unfortunately) and my heart had been racing and loud.   This, coupled with a dip in my energy levels and a marked breathlessness during the previous week’s netball game, made me ignore the locum GP’s stress and deep sighing at my list of discussion points.

I asked her to look at all the niggly, singularly minor ailments I’d had over the years and consider them as a whole, please.  I explained I was sick of putting up with the niggles and it didn’t make sense to me to have them; something more fundamental about my immune system must be underlying it all.  To her credit, she looked at the IBS, hypoglycaemia, skin conditions of vitiligo and keratosis, waxing and waning energy and mood levels, unsuccessful IVF, breathlessness and past glandular fever among other things and ordered a set of tests that had not been ordered before.

I couldn’t be more grateful to her.

I couldn’t be more grateful for my Mum and the lady in the health food shop whose name I must find out.

They have extended my life. 

Being special black old man cancer 300x266 - Before Diagnosis and Special


Statistics: Myeloma UK.

Illustrations: Sapphire Weerakone, clinical psychologist, baker extraordinaire, artist and master doodler are among some of her many talents!

Editor: Stephanie Kemp, for reviewing my first post and helping me keep tenses under control!


© 2017 Janine Hayward  All rights reserved.

Posted in Pre Diagnosis Tagged with: , , , , ,